Time Spent Providing Care

Another way a child’s special health care needs can affect the family is in the
time parents and other family members devote to providing and coordinating
their care. Many families participate in providing health care to their children
through such tasks as administering medications and therapies, maintaining
equipment, and providing transportation to appointments. Families also
spend time arranging or coordinating care for their children by making appointments,
making sure that care providers are exchanging information,
and following up on their child’s health care needs. While the families of 39.2
percent of CSHCN spend less than an hour a week on these activities, the
families of 37.2 percent devote 1 to 4 hours a week to these tasks, and the
families of 13.1 percent spend 11 hours a week or more.

The self-reported time burden is greatest on low-income families. The families
of over 20 percent of poor children spend at least 11 hours per week
providing, arranging, or coordinating their children’s care, compared to the
families of 6.0 percent of children with family incomes of 400 percent of the
poverty level or more.

The greater the impact of a child’s condition on his or her functional ability, the
more time the family spends on the child’s care. The families of 29.3 percent
of children whose activities are consistent affected by their conditions spend
11 hours or more providing, arranging, or coordinating their care, compared
to the families of only 3.9 percent of children whose daily activities are never
affected by their conditions.

Suggested Citation: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services, 2013.